The things I don't say
Saturday, 01/08/2017 - When people ask, "How are you?" I now respond with a laundry list of symptoms, events of treatment and overall status of my physical well-being. I wonder, though, why I don't tell them how I really am, what thoughts are rolling around in my head. I am sure it is because I care about my family and friends that I hold my crazy-cycle thoughts to myself.
Yesterday afternoon while sitting at the desk in our office doing paperwork, I started having random pain again. Not random like here and then there kind of pain, but random being unexplainable. Of course my first thought was, "What is wrong with me?" The scan shows I don't have any lymphadenopathy, yet I am having random pain that is becoming debilitating. This thought turned into the next which was, "I want to again check the side effects of the drugs I'm taking."
My internet search led me to the Mayo Clinic, whom I believe is trustworthy. I type in Ibrutinib and Rituximab and sure enough, my pain is well founded, as is the discomfort I have in my chest, the occasional nausea, the tiredness, the muscle aches, the fevers and chills...and even the cheekbone pain! Our friend Bob happened to be over when that pain struck.
This search then led me to the next which was curiosity over something another Mantle Cell patient said. He told me he was surprised that I was still working. That thought of course reminded me that I had learned in a support group on-line that most everyone with lymphoma was on disability. I had to see what that was all about.
I learned that the Social Security Administration only recognizes 88 Compassionate Allowances which are qualifying disabilities that are always allowed disability benefits; Mantle Cell is one of those. The benefits site goes on to say,
"Of all the lymphatic cancers, Mantle Cell Lymphoma has the lowest survival range.
Very few live longer than 10 years after diagnosis, and most pass away considerably
sooner. Unlike many forms of cancer, MCL is automatically assumed to recur even if
chemotherapy has been deemed successful and the patient is in complete remission.
Because of the generally poor prognosis for those with Mantle Cell Lymphoma and because it requires very aggressive treatment, it always meets the SSA’s listing qualifications. This led to the disease being included in the initial list of Compassionate Allowance conditions."
Still surreal when I read things like this. I just don't feel that sick to even think about disability; yet when I read about how actually terminal my disease is, it is totally overwhelming.
My next search goes to chemo hats; this is inevitable and it is coming soon. Within about 30 minutes I have put 13 items in my shopping cart, everything from scarves to newsboy hats to turbans. I have justified so may hats and scarves with the fact that I may need head covering for 6 or 8 months or longer; I have no real idea.
My pain through the day has worsened; I know I need to do something to help cut it, at least to a tolerable measure. I know this because Jody is asking if he needs to take me to the hospital. I adamantly say, "NO!" I seriously have an aversion to the ER. Since being in the hospital with random pain and fevers I am become much more savvy to treatment of the same. I know now that I really can take a Tylenol just not on a regular 6-8 hour schedule (might mask a fever). I know now that Tramadol is a non-narcotic but works well for me, that Oxycodone is for moderate pain and OxyContin is for the big kind. I have all these options along with the stomach acid reducer and anti-nausea pills that are often required when taken the above pharmaceuticals. I also have some natural methods of pain relief available. I am not at all interested in opioids, or their side effects and by the time the pain is in this realm, Tylenol is not realistic. Natural it is.
Sunday, 01/09/2017 - Breakfast talk with Jody today is real. Yesterday's pain is still lingering, my chemo hat options are staring at me on the computer screen, and I can't forget reading the snippet on the disability benefits page. I am completely in the now and understanding I have cancer and it is terminal. Our conversation was reflective of my thoughts. I told Jody that it was really up to him to start making the big financial decisions as he would be the one left with their ramifications. I then told him that if it were left up to me I would max out every credit card, move to Cancun for the next few years and get drunk on the beach every day.
Our conversation shifted then to me telling Jody again that he would and should find love again when I'm gone. This is a subject that really isn't fair to either he nor I, but I want him to know, that while I know he loves me and will be with me through my forever, he doesn't have to be alone through his. We end this conversation as usual, agreeing to disagree on this subject.
I am reflecting now about the replacement of physical intimacy with emotional intimacy since my diagnosis. Many things are a deterrent to physical relations when a person has cancer. I constantly worry about infection. This doesn't lessen when there is a section on sex and infection in my newly-diagnosed-with-cancer handout from the hospital. My random body pain is a deterrent, as is the overall mind space of both of us. The emotional intimacy, however, is on a level that is completely different than physical, yet still satisfying. Jody and I spend as much time together as possible. We have learned to talk with purpose and real honesty, both of us understanding that time is always brief and there is no use wasting any of it. We have learned to just sit and be. We are comfortable without words. We lay in bed and talk, laugh, cry and pray. We have learned to hold each other through the scared. We are learning emotional intimacy, compassion and friendship.
And so I guess I know why there are things I don't say, those random, disjointed and bunny-trail thoughts are probably best left in my head.